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Genetic testing

Huntington’s Disease and Genetic Testing 

This booklet is a good starting point for anyone who is considering genetic testing for HD.  

It provides information for people who have been diagnosed with HD or who have a history of HD in their family. It outlines the genetic process (how HD is passed on in families) and also describes the choices available for parents who are concerned about passing on the HD gene to their children. 

Genetic testing is not for everybody. Each person has the right to make their own decision and this booklet provides a list of pros and cons for you to consider. 

This booklet covers: 

– a brief description of HD and its symptoms 

– how HD is passed on in families 

– the genetics of HD 

– genetic testing (either before or after symptoms have started) 

– prenatal testing 

– health insurance disclosure 

– pros and cons of testing. 

NB
The information on insurance on page 21 of the booklet is however out of date. See here for separate information on life insurance from 2019-2024.

 

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Position Statement: What we don’t need to prove but need to do in multidisciplinary treatment and care in Huntington’s disease

Abstract Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of ... Read more

National Conference recordings

In May 2021 Huntington's NSW ACT hosted the national conference. This conference was virtual due to the COVID-19 pandemic. There were four key themes for the conference - achieving quality of care; achieving better policy outcomes; achieving better consumer outcomes; and research update.

Medical ID card

Did you know that we offer free Huntington’s disease identity cards? They provide information on HD and have space for emergency contact details. The cards can be attached to a lanyard to help others understand, or kept in a wallet in case of emergency. If you or someone you love would like a HD ID ... Read more

Carer Emergency care plan

The Carer Gateway have created an electronic template for carer’s to use and the latest version can be accessed here. An emergency care plan makes it easy for someone to take over from you in a hurry. It has all the information about the person you care for in one place, so you can get ... Read more

Australians need more protection against genetic discrimination: health experts

Authors: Jane Tiller and Paul Lacaze Published: October 5, 2021 Source: The Conversation   Excerpt: Genomic testing — the ability to read an individual’s genetic code and identify their risk of conditions such as cancer — has opened up huge possibilities in personalised medicine. But it has also introduced serious ethical challenges. Particularly, there is ... Read more

Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination

Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination. This article adds to this existing body of literature by showing why people still worry about genetic discrimination and how they cope with these worries.